AMSTERDAM – The film ‘Aan Niets Overleden’ premiered last week in the Netherlands. It is the first film by the Curaçaoan actor, and director Raymi Sambo. Sambo touches upon a sensitive subject with this film, namely the taboo surrounding HIV, the virus which if left untreated, can lead to AIDS.
This week in Amsterdam scientist, policy-makers, healthcare workers, and activists from around the world will come together for the International AIDS Conference. The British prince Harry, princess Mabel, and President Bill Clinton will all attend to show that together we can rid the world of AIDS by 2030. With such a major international event, one might be tempted to think that HIV’s no longer a taboo in the Netherlands but “ that’s not the case” says Reina Foppen from the HIV Vereniging in the Netherlands.
“The taboo surrounding HIV is not only found on the Caribbean islands, I experience it on all islands, even on Texel.”
Foppen, who has been living with HIV herself for close to thirty years, has stated that “more than fifty percent of the HIV positive individuals in the Netherlands are negatively impacted by the stigma that still exists around this chronic ailment”.
“Parents who for example don’t want their child playing with a HIV positive child. Our society still has a long way to go when it comes to this particular aspect. We’ve made enormous leaps on the medical front, but are lagging behind on the societal one. And that I can tell you, is very sad.”
Foppen has also noticed that the taboo surrounding HIV is alive and well on the Dutch Caribbean islands. “The taboo surrounding HIV is not only found on the Caribbean islands, I experience it on all islands, even on Texel. It has to do with the island mindset that everyone knows each other. It even goes so far that Dutch Caribbean individuals who are HIV positive, and living in the Netherlands, keep their status hidden. They are afraid that the information might make its way back to the islands, and that it might have unintended consequences for their families.
“Taking your medication diligently becomes harder when the people in your vicinity don’t know that you’re HIV positive.”
Hiding your status can also have consequences according to Foppen. “You can grow old with HIV, but you will have to take medication for the rest of your life to ensure that the virus remains undetectable. You can have healthy, HIV negative children, and you can’t transmit the virus to your sexual partners. Taking your medication diligently becomes harder when the people in your vicinity don’t know that you’re HIV positive. I know individuals that hide their status from their partners out of shame or guilt. They hide their pills in the shed, or in their work bags.”
Foppen states that by hiding your status you not only put an immense pressure on your medication intake schedule, but also on your emotional, and social wellbeing.
“Research has shown that HIV positive individuals who can speak openly about their status, can weather negative commentary about their status much better than those who can’t. These individuals also tend to be happier in life. The people in their close vicinity are essential to their emotional protection.”
“Thanks to medication you can now grow old with HIV, and you can even have healthy children. A lot of people still do not realize this.”
Foppen sees a long way to go when it comes to the acceptance of HIV positive individuals in society. “It still starts with the spreading of information. Repeating simple facts such as: you can’t get HIV from simply playing with each other, or from a toilet seat, or a mosquito.”
The HIV Vereniging also provides recently diagnosed individuals with peer-counseling, and workshops if they feel like they need it. The contact with other HIV positive individuals offers great support, and usually helps them along the road towards acceptance. The association advocates for these kinds of support systems to become a standard practice of care for specialized treatment within the health care system.
“However, we also have to share more of the good news”, says Foppen, “that thanks to medication you can now grow old with HIV, have sex with your partner without transmitting the disease, and that you can even have healthy children. A lot of people still do not realize this.”